Health and social care leaders set out next steps to transform care for people with learning disabilities

England’s key health and care bodies have today published a report setting out the next steps of a system-wide plan to answer the calls from individuals and their families to overhaul services for people with learning disabilities.

The report sets out a series of ways in which NHS England, the Local Government Association (LGA), the Association of Adult Social Services (ADASS), the Care Quality Commission (CQC), Health Education England (HEE) and the Department of Health (DH) , intend to improve the quality of life of those with learning disabilities by substantially reducing the number of people placed in hospital, reducing the length of time those admitted spend there, and enhancing the quality of both hospital and community settings.

Plans to achieve these ambitions include:

Empowering people and their families by giving them the means to challenge their admission or continued placement in inpatient care through an admission gateway process and Care and Treatment Reviews, reducing the number of admissions and speeding up discharges;

Getting the right care in the right place by working with local authorities and other providers to ensure that high quality community-based alternatives to hospital are available, meaning more people can get the support they need close to home;

Driving up the quality of care by tightening the regulation and inspection of providers, including closing poor quality settings and preventing inappropriate new settings from opening;

Strengthening accountability for improving outcomes by reforming contracts, including giving commissioners the ability to fine providers who fail to meet care standards or an individual’s personal objectives;

Increasing workforce capability by working with patient and carer groups to address gaps in skills, best practice and staff awareness of learning disabilities and mental health problems, and;

Improving the amount of data and information collected and shared by public agencies to ensure that a person’s outcomes and destinations are monitored, and that local public services can be held to account for their progress.

As at September 2014, there were 2,600 people in inpatient settings in England.

In the last few months, NHS England has undertaken a major programme of Care and Treatment Reviews for those who had been in hospitals or institutions the longest. 1,032 reviews have been completed and 566 inpatients had been discharged by mid-January. It is expected that discharges will increase in the coming months as Care and Treatment Reviews become mainstreamed.

The system-wide response will be spearheaded by a new Transforming Care Delivery Board, which is made up of senior representatives from each organisation responsible for delivery. Engagement and involvement of people with learning disabilities, their families and carers, and other stakeholders will continue to be a vital part of this programme.

A Reconfiguration Taskforce will also be established to help local leaders drive through the changes at pace in the North of England over the coming months, with the learning from that region helping to inform the national rollout.

The report comes ahead of the Department of Health looking at further legislative steps to strengthen the rights of patients and their families.

Jane Cummings, Chief Nursing Officer England, said: “People with learning disabilities and their families have rightly demanded action on this, and there is nobody more frustrated than me that progress so far has not matched those calls.

“Providing the best and most appropriate care and support for people with learning disabilities and their families is a key priority for all the agencies involved in this report. There are no quick fixes, but nobody is happy with how things have been done for decades, and we are determined to drive through change quickly and safely.

“We have made some progress since we commissioned and received an independent report to chart a new way forward, carrying out over a thousand Care and Treatment reviews and transferring hundreds of people from institutions to community-based placements, but we know that there is much further to go.

“These plans, and the plans which will follow, represent a concrete and system-wide commitment to work together as agencies alongside people with learning disabilities to greatly improve how we care for them, and demonstrate our high ambition for their futures.”

David Behan, Chief Executive of the Care Quality Commission, said: “People with learning disabilities have every right to receive high-quality, safe and compassionate care.

“Through our inspections and from what people tell us, we will determine whether services are providing care that is safe, caring, effective, responsive to people’s needs and well-led.

“If we find that providers are not offering care of the quality we expect of them, we will hold them to account to make the required improvements.

“Also, if we ever have concerns about a provider’s ability to meet these standards when they apply to register with us, or make an application to change their registration, we will want to be satisfied that the provider has the capacity and capability to provide services which are high quality, compassionate, safe and focus on promoting independence. Within the registration legislation we have the power to refuse applications and would not hesitate in doing so to ensure people are protected.

“At all times, we are on the side of people who use services.”

Professor Lisa Bayliss-Pratt, Director of Nursing, Health Education England said: “We are looking forward to working with our partner organisations on this important programme, and taking this work forward together.

“Working with people with learning disabilities and their families means we can develop a programme of raising awareness and training to enable us to enhance their independence and inclusion into local communities as well as improving health and prolonging lives.

“We will prioritise the development of direct care staff using a meaningful knowledge and skills framework, so that they have positive attitudes and use positive approaches, to enable high quality interactions take place every time.”

Cllr Izzi Seccombe, Chairman of the Local Government Association’s Community Wellbeing Board, said: “This firm commitment to joined up working means we are now able to accelerate at pace to ensure anyone with a learning disability, autism, a mental health problem or behaviour that challenges is offered safe, high quality local care.

“Councils will continue to work in partnership with families, the NHS and other local partners to make sure people are listened to and are at the heart of the services they receive, and that community capacity is developed further to allow even more people to live closer to their family and friends.”

David Pearson, President of the Association of Directors of Adult Social Services, said: “The reports on the follow up to Winterbourne View this week provide a strong reminder of all that there is still to do to make sure that more people with disabilities who need high level of health and social care support are able to live in their own homes or other settings with support.

“The reports also show how this needs all the agencies to be working with the people concerned and their families. We are all determined to ensure that progress is made and that more people have the best care in the right place.”

This is good news, but it needs a timetable with deadlines that must be met. It also needs an identified end point that indicates what services should look like and how to get there. It cannot just be some initiative that rumbles on indefinitely whilst vested interests drag it down. Accountability and genuine progress are the essentials here.